BrianLehrer.tv: CrowdMed

Brian Lehrer: Some medical conditions are so difficult to diagnose, so mysterious, that second opinions from specialists don’t bring answers or relief. But at a web platform called CrowdMed, people can now reach far and wide for answers. You post your symptoms and you “bid” for medical detectives to come up with a diagnosis.

How exactly does this work, and what does it cost? Joining us, the founder of CrowdMed, Jared Heyman. Welcome to the program.

Jared Heyman: Thank you Brian. Good to be here.

Brian: Explain the very basics here, because I’m sure people heard that introduction and thought “What? We put this out on the Web and somebody who’s never examined me can come up with a diagnosis?”

Jared: So, we have a unique perspective on medical diagnosis and treatment. The traditional medical system is based on this concept of an individual specialist, one person, looking at your case and examining you – the patient and your case – working all on his or her own, and trying to take that individual approach to diagnosing or hopefully curing your disease.

We have a much different philosophy, where we believe in the wisdom of crowds, and we believe that large groups of people are better equipped and collectively smarter, if you will, than even the smartest individual doctor in the world. So what we do is, if you’re a patient and you have an unsolved medical mystery, you can submit your case on our website, you answer a brief patient questionnaire, you can upload any medical records or diagnostic test results, imaging test results – all completely anonymous – and we post your case on our website and collect the opinions of often dozens of medical experts from around the world who collectively try to give you diagnostic or solution suggestions that bring you closer to a cure.

Brian: And what’s the “bidding” aspect of this?

Jared: Our site is partially a marketplace, where patients can offer what we call “medical detective compensation” – it’s a cash offer that is distributed to the people who do the best job solving your case. Offering this is optional. A lot of our patients submit their case for free, or they don’t offer any medical detective compensation, and their cases also get plenty of attention from our community – though, as you can imagine, if you offer a thousand dollars or more or provide a compelling compensation offer, you do get more attention from our community than someone who hasn’t offered any type of incentive or reward.

Brian: Because you distribute that money among the people who post responses?

Jared: It’s all based upon performance. So, you don’t get any piece of that money just for participating – we have an entirely performance-based rewards system. However, you can get a piece of that (reward) if you are essentially helpful to the case, and help bring the patient closer to a correct diagnosis or cure.

Brian: Who judges that?

Jared: The patients themselves! The way the reward is allocated, first of all, the patient tells us whether they found the results helpful and, assuming they do, there are three ways they can reward the (medical) detectives: Up to 50% of their rewards is what we call a discretionary reward allocation, where they just choose the people who they subjectively found to be most helpful during the case. The other way that a medical detective can win compensation is by suggesting what either turned out to be the best diagnosis or the best solution in the case, or by allocating points or supporting someone else’s suggestion that turned out to be the best.

Brian: But, because you have “bids,” if I’m Michael Bloomberg with a mysterious stomach ailment, I’m more likely to get more people on my case than if I’m me, with a stomach ailment.

Jared: Well, assuming Michael Bloomberg offers a high cash reward, which I’m sure he’s in a position to do, then, yes, his case probably would get more attention. But the attention of our medical detective community is a scarce resource, and we have to have some way of allocating it to the patients, and we figured those patients that are willing to offer more are probably in greater need (having been frustrated by years without any diagnosis and all the medical costs they’ve incurred prior to their coming to us).

Brian: So, have you cured anybody?

Jared: We’re very proud of our success statistics. We’ve had over 500 cases that have been resolved on the site since we launched about a year and a half ago. 60% of those patients tell us that CrowdMed successfully brought them closer to either a correct diagnosis or cure. So we have literally hundreds of success cases, and these days, every week, I get an email or a letter from a patient who we either saved their life or brought them answers that the medical establishment hadn’t, and they’re very grateful. It’s very rewarding.

Brian: Are there types of mysterious illnesses that tend to be the most prevalent? Are they, I’m thinking, digestive (issues), because people tend to present with ‘I don’t know what’s wrong, is it irritable this, or what?’ but maybe it’s something else. What is the most common?

Jared: Well, the one commonality amongst our cases is there’s no common answer. We see a very long-tail distribution in terms of the types of diagnoses that our patients end up having. No single diagnosis is more than 2% of the total (of all cases we help diagnose), and most diagnoses we’ve only seen once or twice in the entire history of the website. So, these are patients that have very rare or difficult to diagnose conditions. If they had something in common, they probably would have been diagnosed through the traditional medical system.

To give you an idea of how complicated these medical cases are, our average patient has been sick for 8 years, they’ve seen 8 doctors, and they’ve already incurred more than $50,000 in medical expenses before they even submit their case on our site. So, these are not colds and flus, or even simple GI (gastro intestinal) issues, these are complicated and chronic conditions.

Brian: So, could this change the medical system overall – besides being, you know, a particularly crowdsourced service for relative few individuals? Do you think this can change the nature of medicine?

Jared: We think it can have a pretty big impact on the entire medical industry. To give you an idea of how important this problem is, in the US, about 5% of patients count for over 50% of the country’s total healthcare costs. Now, some of these patients we can’t help. They have end-of-life issues or the system already knows what’s wrong with them but the treatment’s very expensive. But we estimate about half of these patients we can help. Even though our target population is only about two and a half percent of the population, that two and a half percent represents over a quarter of the country’s total healthcare costs. If we can shorten the duration of their illness, and bring them to a correct diagnosis or cure much more quickly than what would happen if they continued bouncing through the medical system, we think we could actually take a pretty sizable chunk out of the country’s total healthcare expenditures.

Brian: I gather you’re not a doctor. So, how’d you get into this?

Jared: I’m not a doctor, I’m a technology entrepreneur, and my previous company is an online survey firm, called Infosurv, (which) still exists today. And at Infosurv, I learned a lot about the wisdom of crowds – this notion that large groups of people can collectively be very intelligent, as long as there’s the right mechanism in place to aggregate their intelligence. And I developed a product over there called InTengo that still exists today as well, and that is a crowdsourcing platform using a similar market prediction mechanism to what CrowdMed uses, but to answer questions of interest to market researchers.

So, over the years I spent at Infosurv and developing InTengo, I really learned about crowd wisdom and how best to harness it, so I had the knowledge (through that experience). But what really inspired me to take on this particular mission and to apply this to medicine, is my little sister, (who) spent three years with a very difficult, chronic, undiagnosed medical condition. And over that three year period, I saw her bounce from doctor to doctor – in total she over two dozen specialists, she had terrible symptoms, depression, anxiety, weight gain. At some points she even started to have suicidal thoughts, so it was a really life-threatening condition.

Fortunately, she was eventually diagnosed by a top-notch interdisciplinary team of physicians at the NIH (National Institutes of Health) clinical center.

Brian: Not through crowdsourcing though?

Jared: Well, in a way it was. This is before CrowdMed existed, but I think it’s no coincidence that it was an interdisciplinary team of physicians, working together at the NIH in Bethesda, I think it’s no coincidence that’s how she got diagnosed, and not by continuing to just bounce from specialist to specialist. So, in a way, her diagnosis was crowdsourced.

But (also), she was very fortunate to get into this program at the NIH. Most people don’t have that luxury. So, I wanted to create a platform where people like my sister, who don’t have the resources to go to the NIH or perhaps the Mayo Clinic – maybe they live in a country where those resources aren’t available, maybe they live here in the US but just don’t have the financial resources – I wanted to give them a way to tap into the wisdom of crowds, and get a cure like my sister did.

Brian: And, who are the people who tend to participate. You said they tend to be medical professionals. It sounds like they don’t get paid that much or that often for doing this medical detective work. So are these just “Good-Samaritan” doctors doing this as a hobby, or, who’s your crowd?

Jared: Sure. Well, it’s safe to say that no one participates on CrowdMed for the financial rewards, although that is a factor. When we asked detectives what motivates them, usually they mention ‘money’ about fourth or fifth (down) on their list – and nobody’s making a livable wage solving cases on our site, even if you lived in a country with a very low cost of living. So, they’re not “professionals” or not professional case-solvers on our site let’s say. That being said, about two-thirds of them do work in or study medicine. So, these are people active in medicine – most commonly doctors, nurses, med students, we see nurse practitioners, different types of allied health professionals – but two-thirds of them have a medical background. The other one-third are often other patients, who maybe had a particular disease themselves, and they might know more about that disease than even the majority of doctors out there.

And we find that mix between the medical professionals and the patients really works quite well, and tends to produce very good answers for our patients.

Brian: You said you’re a tech entrepreneur. Is this a business or is this a non-profit?

Jared: I did consider a non-profit structure for this but I decided to go the for-profit route. We are a venture-backed Silicon Valley startup. We’re backed by $2.4 million dollars from a wide range of top-tier Silicon Valley VC firms, plus some angel investors – one of them is the actor Patrick Dempsey, who a lot of people know – and some other prominent folks. So, we are for-profit, but we still have a very social mission. We really do want to change the world.

Brian: How do you make money?

Jared: Currently, our sole source of revenue is our patients. I mentioned our patients can submit their case free of charge, and a lot of them do, (but) we also have paid packages that begin at $99 and go up to $499. Those packages include longer case duration, the ability to continue chatting with medical detectives post case. The $299 and $499 package also include two and three hundred dollars in medical detective compensation included in the package so, of course, the people who opt for that package, they get a lot more attention from the medical detective community.

Brian: How about privacy? Everybody’s so concerned with medical privacy – there’s the HIPAA law, and scams. Because, you don’t know who these crowdsourced people are, who their medical detectives are for the most part, if you are the patient. So how do you protect against abuse of your information, such private information if you’re a long-suffering person with a very difficult condition? And what about scammers?

Jared: We take privacy very seriously on the site. First of all, we never say the name of the patient or (share) any personally identifiable information whatsoever. So each patient is known by their pseudonym, a name they make up – it can be their real first name if they choose, or very often it’s a fake name they just make up.

Brian: And you, as the broker, are sort of a go-between?

Jared: Exactly. We act as that firewall protecting their privacy. On the backend of course, internally, we have their email address, and we have to have a way of contacting them, but we never divulge their personal information on the case, and we encourage them – if they upload any medical records or anything that might have their name on it – that they black out or remove any personally identifiable information. We want them to be completely anonymous. Obviously the medical detectives need certain demographic information, like their age and their gender, ethnicity, because a lot of diseases are genetic in nature, but nothing that would uniquely identify who they are.

Brian: And the scamming – not a problem because the patient, him or herself, rates whether they’ve gotten a successful diagnosis or progress towards a cure?

Jared: That’s right. We think it’s very difficult to game our system. We’ve tried to think of all the ways someone might try, and so far we haven’t seen any evidence of any kind of gaming behavior or people trying to win money by not actually adding value. Because, at the end of the day, you can only make money on our site by providing true value to the patient, as determined by the patient.

Brian: Which does make me wonder though, is there such a thing as an informational placebo effect?

Jared: I’m not sure what you mean.

Brian: Well, somebody could feel better, think they’re better, maybe actually be better, by getting information that they think is right – whether it’s technically right or not.

Jared: Well, I would say that part of the value we provide is giving patients information. And even the 40 % of our patients that tell us we did not bring them closer to a correct diagnosis or cure, many of them are still quite satisfied, just because they got some information they found of value. I think the fact that we provide (access to) people that really listen and really care, often dozens of them, whereas in the medical system a patient might have ten minutes to speak with their doctor and that’s all, that is I think of value. So, if it’s a placebo, I think it’s a good placebo.

Brian: Alright! The wisdom of the crowd in medicine. Thank you very much!

Jared: My pleasure! Thank you.

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Brian Lehrer, the popular Peabody Award-winning host of WNYC Radio’s Brian Lehrer Show, hosts an hour-long weekly television show, BrianLehrer.tv, on a wide variety of topics, including the digital age and how it’s transforming our world; new social and political trends; entrepreneurs of change; New York City politics; grassroots environmental efforts; one-of-a-kind, timely stories in the news; and innovative inventions and apps.

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The CrowdMed Blog

CrowdMed harnesses the wisdom of crowds to help people struggling with unresolved medical issues. On the blog you'll find stories from our community, from patients and medical experts who have seen the best and the worst of modern medicine, and who strive to empower people dealing with the healthcare system.